Like a ghostly specter, it’s here, but not here, and seen, but not seen.
Yet this frightening bacterial infection—once called “The Great White Plague,” it still claims more than one million lives around the world every single year—makes its presence known to me in more ways than one.
In fact, it will probably continue to do so until I take my last breath.
I was in first grade and had just turned five years old.
Our ground level classroom boasted an entire wall of tiny windows that went all the way up to the ceiling, which allowed us to look out into the sunshine. On other walls were posters with pictures of different professions. There were a lot more choices for boys, but I remember that we girls could pick three: nurse, teacher or secretary.
Growing up to be a nurse featured a very cool cap, and also seemed the lesser of all of those evils. So, I thought that’s what I would have to be (this is especially ironic since I’ve can’t stand the sight of blood, and have been both a darn good secretary and teacher’s aide).
But what I remember best about that sunny room was my teacher, Miss Kelly.
She was pretty and bubbly and seemed to like us. There was another thing that I really loved: the way she reacted, or rather, didn’t react, the morning she passed out writing paper, then instructed us to pick up our pencils in the hand that felt most comfortable to us.
I cradled mine in my left hand and started to scribble. Looking up after a minute, I thought it odd that everyone near me was using their other hand. But Miss Kelly never said a word, and because of that, I have never, ever, felt different because I was left handed.
Then one day, I started to cough.
This wasn’t a scratchy cold kind of cough. It was intense and strong and significant, and came from a place buried deep inside my lungs. And because I was a little slip of a girl, and because it wouldn’t stop—no matter how long I held my breath and imagined being on a bronco that was trying to buck me off—I was soon very weak, and very tired.
I have no memory of seeing a doctor and getting the diagnosis of tuberculosis. My dad worked as a post office clerk, and there was no health insurance. We went to our public health department instead, and that’s where I first heard that I “might have a slight case” of TB. I was given little white pills that I had to learn to swallow.
I still remember my mother showing me just the right way to get them down with a glass of water. We were standing in our tiny galley kitchen, and she was calm and matter of fact. But thinking about it now, she must have been scared to death, knowing that her only daughter absolutely had tuberculosis, and who knew what the coming weeks would bring?
Those weeks brought a few changes.
I was pulled out of Miss Kelly’s class, and I stayed at home, sleeping a lot, taking those tiny pills a few times every day, and getting a little stronger, too. I also had my own dinner plate and glass and knife and fork and spoon, which were kept separate from everyone else’s place setting, and washed in the hottest of soapy water away from the other dishes.
At one point, doctors needed a vial of blood.
Being so skinny, it was difficult to find a vein. I remember screaming and crying and then kicking; it was then that medical personnel surrounded me and pinned me down to the ground. They eventually found a spot to put the needle,
but it was years before I could get blood taken without shaking. There were also other trips to the health department, where I bravely stood high, took deep breaths, and received my first chest X-ray from a clanking machine taller
I was a smart kid, so quickly caught up when I was allowed to return to school a few weeks later. (Most folks with active TB who have had appropriate drug treatment for at least 14 days are no longer contagious.)
But I wasn’t out of the woods.
I couldn’t give anyone tuberculosis now, but a skin test indicated that I was definitely TB positive. (Much like the chicken pox virus, this lurking evidence will stay with me for the rest of my life.) Adding to the whole awful experience was that no one knew how I had picked up the infection.
Because it was all such a mystery, combined with the fact that my mother had had rheumatic fever at about the same age, first grade was also the beginning of my mom’s lifelong vigilance about my lungs.
During the winters, I would have to wear the warmest of coats, no matter how ugly or ill-fitting. I wasn’t allowed to leave the house until that garment was completely buttoned, all the way to the very top. “Keep your chest covered! Don’t let the wind blow on your chest!” she would bark. Now, too, she would drag me to a pediatrician whenever I got the least bit sick. It no doubt cost money we didn’t have, but she wasn’t about to take any chances.
The health department visits continued over the years as well.
Indeed, I was mandated by the county to get an annual chest X-ray. That finally ended when I was 12 years old. My lungs had been clear for a straight seven years, and those ghostly pictures were no longer necessary.
But because the tuberculosis inside me will never go away, a flashback came rushing to the surface eight years ago.
I had applied to work as a crossing guard at our neighborhood elementary school, and part of the requirement was getting a TB skin test. I told the school secretary that that test would absolutely come out positive, and lucky for me, she understood. A friend of hers was in the same boat, she said, so I could get a chest X-ray. To do that, I had to visit the friendly health department in this county.
There, I told the head nurse the whole story. She ordered that X-ray, but before I left, suggested a course of antibiotics for a full year.
“Do you understand that this was more than 50 years ago?” I asked.
She did, and said that while she highly recommended this action, she wasn’t going to require me to do so.
I didn’t, and the only chest X-ray I have ever had as an adult came out clean as a whistle.
In more ways than one, I know I’m one of the lucky ones.
But my lungs were permanently weakened—whenever I catch a cold, it almost always goes into my chest, where it rattles around for weeks. I also make sure to never let myself get too tired; I was not one of those college students who pulled all-nighters because I knew it wasn’t an option. I know, too, that I will never go where I might be of service, because thanks to overcrowding and poor ventilation, refugee camps and prisons and immigration centers are the perfect places to catch TB. Likewise, you won’t see me booking a ticket to India, Africa or Pakistan anytime soon.
Except for those few weeks so long ago, tuberculosis never has, and never will, define who I am.
But that scared first grader who couldn’t stop coughing?
She is always there.
Is there something from your childhood that has had a lasting effect on you as an adult? I look forward to
hearing your story!